The ABCs Of HIV: How To Get The Language Right When Talking About Charlie Sheen
Even the most conscious among us are falling into tired traps.
This week, in what was a hard-to-miss story for all except under-rock-dwellers, Charlie Sheen disclosed his HIV-positive status to the world. “I am, in fact, HIV positive,” he told Today‘s Matt Lauer, admitting he had been blackmailed into paying millions to keep the story under wraps until now.
The news has left us with an avalanche of inaccurate reporting that misdiagnosed Sheen as having AIDS, as well as a counter-avalanche of pieces explaining why those pieces are incorrect. It’s also brought forth a parade of misinformed opinions and judgements about the morally questionable celebrity; but while a history of violence against women may make him a terrible person, he still doesn’t deserve to get HIV.
— fleetstreetfox (@fleetstreetfox) November 11, 2015
As with any marginalised community, how everyone talks about HIV in the aftermath of this news has a significant bearing on the mental health and wellbeing of people like me who live with it. Despite the virus entering its fourth decade, for many it still conjures an image of AIDS, death, and despair — but here in Australia, as in other parts of the world, these images are far from the reality.
With that in mind, let’s look at some of the need-to-knows of HIV in 2015.
Avoid saying “AIDS” when you meant “HIV”
This should be well-worn territory for anyone who studied sexual health in school, but HIV and AIDS are two separate, albeit connected, things. HIV is a virus (the Human Immunodeficiency Virus) that enters the body through infected blood or other bodily fluids. If HIV is left untreated, the majority of people living with it go on to develop AIDS (Acquired Immune Deficiency Syndrome). You can’t ‘catch AIDS’ off another person; you can only develop it once you become HIV positive (and that usually takes several years).
So when people talk about HIV, why is it important to avoid saying AIDS?
Aside from being accurate, the reality here in Australia is that living with HIV does not mean one day we’ll develop the illnesses that define AIDS. The instances of AIDS in Australia are so low, in fact, that we’ve stopped widely publishing the data. But many still remember a time when AIDS was an epidemic, one that resulted in nearly 7000 deaths.
It’s important that when we talk about HIV today, we don’t just refer to it as AIDS. It’s disrespectful for both the 36 million people living with HIV, and the 39 million people who have died from AIDS-related illnesses. We can’t ever forget that time, but we do need to move forward.
— AFAO (@_afao) November 17, 2015
Avoid referring to us as ‘patients’ or ‘sufferers’; instead say ‘people living with HIV’
This one is really important. HIV is one of the first epidemics in history in which the people living with the illness stood up and demanded to be seen as equals, not victims. AIDS came to the West in a politicised moment in liberal history, hot on the heels of gay liberation and second wave feminism, which meant the people immediately affected had defined identity politics and weren’t afraid to use their voice.
While our community has been very good at making noise about this, it can be a hard thing to wrap your head around if you don’t live with HIV — especially for doctors who are used to viewing people in their care as patients.
While it may seem pedantic, it’s incredibly important to our sense of identity. When you live with a chronic illness that requires some form of daily treatment, it can sometimes feel as though that condition defines you. So when people refer to you constantly as a ‘patient’, it’s a quick leap to seeing yourself as a victim.
The key to developing resilience is realising we are anything but that.
Avoid thinking that being HIV-positive means being a ‘poof’, a ‘whore’, or a ‘junkie’
Firstly, don’t use those words! Secondly: if someone is gay, a sex worker, or a person that uses drugs then yes, the communities they belong to make up one of the key populations affected by HIV. But identifying as belonging to one of those groups doesn’t automatically mean you have HIV, or that anyone outside those communities won’t have it. The other key populations are people in prison, and women.
Yep, that’s right. Globally, the key population most affected by HIV are adult women, who make up 51% of the total population of people living with HIV. The vast majority of those women live in the developing world, Sub-Saharan Africa and Asia in particular, but they don’t exclusively live there.
There is absolutely nothing to be ashamed of if you are gay, a sex worker, or a person who uses drugs (ahem), but the stigma associated with those communities can mean others are less likely to get tested for HIV or seek out information, for fear of being associated with them.
Avoid saying,“I’m not surprised they got HIV”. Instead, say nothing.
If you think that someone deserves HIV because of how they live their life, you might be confusing morals with medicine. No-one deserves a chronic illness. There are many ways a person can contract HIV; over the years this has included sex, drugs, blood transfusions, and rape.
You never know the journey a person has gone on to be where they are today, and you can never assume the motivations behind their life choices.
That last point is particularly tricky when it comes to highly visible people like Charlie Sheen, whose public life and criminal behaviour makes him a target for scorn. While I will always have a place under the nearest bus for Sheen for his horrific record of violence against women, as a person living with HIV I recognise I cannot pick who is part of my tribe. Every single one of us deserves the right to live a long, healthy, without fear of persecution.
Sadly, the quality of our lives is often tied up in how others view us, refer to us, or treat us. So bear in mind that while human headlines like Charlie Sheen are public fodder, every headline, comment or status update could be viewed by people living with HIV as a reflection of themselves.
Nic Holas is a writer who focuses on the contemporary gay experience, and being a person living with HIV. He is co-founder of HIV social umbrella The Institute of Many, and you can find him on Twitter @nicheholas